In searching for medical advice, be careful about involvement with online medical patient forums and support groups on social media. Not all online medical interest groups and forums maintain high standard of enrollment and moderation. Individuals certified in their knowledge and direction are musts for a good group. Without proper vigilance and critical thinking, you may encounter dicey situations or be influenced by inherent bias. This article delves into the bad side of online patient forums and medical interest groups for patients with rare diseases. I write from my own bad experiences.
It can be extremely lonely having a chronic illness. In between doctors’ appointments, time can pass at a snail’s pace and questions arise. Some doctors are not as good at communicating as others via patient portals outside of appointments as others. During appointments, there can be disruptive interruptions requiring the doctor’s attention. You may feel left in the lurch and still have questions you feel need to be answered.
Imposters and Predators
You may be led to explore social media interest groups and online medical forums. I highly discourage this. You simply do not know who you are dealing with in faceless online groups. Some people join these groups to prey on others. These may be pure imposters, or people who have other motives than simply participating and sharing. As in any realm of social media, there are folks participating just to promote themselves or a product. Some are dysfunctional sufferers who are in no actual position to give advice or knowledgeable information. Actual continuous factual moderation for online patient groups is rare. Some people online act more irresponsibly than they might in person, because nobody knows “who they are.” Safety issues are one bad side of patient forums and social media groups.
In my own experience with online medical patient forums and medical interest groups, I had some shocking interactions. My first eye opening experience involved delving into Myasthenia Gravis forums. In starting IVIG treatments, I felt lost and insecure. I feared the uncertainties of living with a worsened case of the disease. I was grasping for any idea about how my future might be shaping up. Even though MG is a disease where everyone is different, I hoped I’d find a common thread for information. It was such a horrible feeling to be completely physically reliant on others for even getting out of bed. I just wanted some hope.
Insufficient Case Knowledge
In my involvement with online patient groups, one thing stood out. The majority of people want simple answers to extremely complicated problems. I found that most of these problems would need an educated overview for proper assessment. This is why you see a doctor. You see them for their expertise in handling these very complicated situations in a succinct, effective manner. Most online forum participants don’t have this overview. Oftentimes the people who are loudest in responding are the ones who least know what they are talking about. These people are very convincing in their confidence, because they aren’t aware that they are actually wrong.
Medical forums and groups can be negative for your mental health, because most people on medical forums are already very angry. This is understandable. If they felt they were getting all the information and support they needed, they most likely wouldn’t be turning to online sources. I had to tell one desperate caregiver they were actually making the patient worse. The amount of rage and blaming the patient for this life disrupting illness was not going to help anyone. They expressed so much stress and discord, it could nothing other than affect the patient negatively (see Advice for Caregivers).
Their solid conviction of knowing more than the doctor, mixed with hurling insults about the healthcare provider was also extremely disturbing. All of this was while making no rational sense themselves. In trying to find information and help for myself, I got dragged into someone else’s drama. It was an eye opening experience. I knew I’d rather trust my doctor, or move on to another, than to believe people like this. Bad advice is another drawback to patient forums and social media groups.
From then on, I tried to become more patient about searching for answers about Myasthenia Gravis. I got to “know my disease” better in myself, developing the patience to observe patterns and trends in my own symptoms. Online groups were never tempting until about two years later. I developed extremely painful muscular symptoms. I approached my neurologist out of sheer desperation, but there were no quick answers. Physical examinations led to a hypothesis that I might have a progressive disease that would only get unspeakably worse. It’s disease so rare it makes Myasthenia Gravis look like the common cold.
Group Think of Misery
It was terrifying and I felt desperate. Then I joined an online group for sufferers of the disease. I suppose I convinced myself I joined the group to collect evidence *against* me having the disease. My own neurologist was not an expert in the disease. Getting to communicate with experts required a positive overall result to a lengthy battery of tests. Definitive results for tests (blood tests, lumbar puncture, and more) couldn’t come quickly enough! Reading others’ experiences with the disease was horrifying. It spooked and unsettled me. I felt even more anxious. In the end I felt worse than if I had left well enough alone.
Months later, when the hypothesized diagnosis was thankfully disproven, many in the online group insisted the doctor must be wrong. They asserted I must continue to seek care for this disease. It didn’t matter that I had just been declared not to have it by leading neurologists. For me, the pronouncement was cause for celebration. It didn’t matter I still didn’t exactly know what was causing my symptoms. At least it wasn’t THAT! A year out, I can concretely say I do NOT have the disease. I have gotten successful treatment for the symptoms that caused the hypothesized diagnosis in the first place. It was more important to the group’s bias that I stay, than that my life sentence of their illness be lifted. It spotlighted the notion the misery loves company – an extremely valid reason that patient forums and social media groups can be bad.
What should you do when questions need to be answered? For social support, stick to moderated support groups via in person meetings. In the pandemic era and onwards, tele-sessions organized by official medical caregivers are appropriate. Moderated support groups “with faces” can be a springboard to connecting people facing similar problems. Avoid [dot]com “information” sites, because they inherently exist for the purpose of selling something. Even if [dot]com sites seem informational, their information is usually biased at some level. They have an agenda of pushing product as their true main goal. The “product” can vary from treatments, to medical practices / doctors, on to publications, and the like. You may notice this blog is on a [dot]com site. I sell my art and jewelry here. My blog is here through a desire for autonomy and web ranking.
Additionally, a resource for information outside of doctor’s office visits is scholarly papers. Otherwise, much research is biased towards proving a specific result. Such research has a certain result demanded by the its sponsors. It is no longer unbiased research, true for everyone. Think of how any independent study on the safety of cigarettes varies from a study sponsored by a cigarette company. It’s a good idea to investigate for whom and why the paper is being written. There may be inherent bias.
In closing, approach your search for medical information outside of doctor’s visits with caution. Be aware that all of the traditional pitfalls of social media also occur in medical interest groups on social media. When you review information, think critically about its source, be it an online forum, or a sponsored medical paper. If you choose to become involved with groups, remain vigilant that the overall experience is actually healthy for you.